How about a thread for people not recently diagnosed?

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  • a_oaklee
    a_oaklee Member Posts: 566 Member
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    Srashedb said:

    Name

    I actually like Peter but don't want you to feel guilt; guessing you must be Cathlolic. So, Pete it will be.

    teachers are probably the lowest paid, least respected professions and it is heartening to know you want to stay in it.

    We were fortunate in having my husband at retirement age although in CA, teachers must pay into a comparable program to social security. My husband's ex-employer is so incompetent, however, that they continue to treat him as not retired which means he can collect under both systems until they figure it out.

    the $1200/a year is all the medical payments he needs to make; so far, Medicare has not covered a bone density test since he is male and under 70. Other than that, everything gets paid. i can't imagine the stress of not having insurance cover a scan and having your income take the plunge. 

    Is disability permanent or is it something that can changed back? I agree with JoJo about maybe returning to teaching later, maybe as a substitute? Out here, it pays over $100/day (no benefits of course) but it is not something disability would bar you from. 

    Sarah

    Bone density test

    Sarah, my husband is on medicare and had a bone density test paid for.  He was 66.

    annie

  • a_oaklee
    a_oaklee Member Posts: 566 Member
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    Jan4you said:

    My dear Jojo, and others who

    My dear Jojo, and others who may have a spouse that doesn't deal (verbally) with your cancer/treatment/issues/mortality. ... may I suggest you show him how to be there for you. Again, isn't this more about you now? If the tables were reversed, wouldn't you want to learn how to be there for your partner/spouse too?

    Why not sit them down, when its a good time ( when you're not hurting or angry) or write a letter to them on what you need and why. Again, my thinking is that most do not like any conflict or icky things to deal with in our lives.. so not talking about it is one way.. gulp. But convince me that by NOT addressing those icky parts helps you with your recovery?

    Why not try to either write or speak to them about HOW and WHAT you need? You could say, I know you may not like talking about my cancer issues, but this is what I need from you. Then list your needs. (maybe a few to start with).

    Don't you think they need to know how their lack of support affects you, your mood, energy and ability to go on this journey without their support?

    Use "I" statements, not "you" statements which will only put them on the defense.

    Make it about the behaviors, not the person. Like, "When I tell you ______ and I don't hear any response from you, I wonder if you are not sure what to say, or just do not want to face this issue with me. I can understand both, but this is what I would like you to try.. _____ name the behavior you'd like from them.  Nod your head, hug or touch my hand, but I need to know WE're connected throughout this time. I need you to be there for me.

    Now for those of you having a partner smoke around you, or even what lands on their hair/skin/clothing, you must speak up about how it affects YOUR health. Please!

    Remember, doesn't your silence say its okay? So they keep doing it? Or not doing what you need from them/

    Maybe I am overstepping the bounds here.. but it saddens me that you ONLY have 1 chance  in your lifetime to be the loving spouse/partner.

    You have no idea how this drains YOU from geting YOUR needs met.

    It is OKAY to get your needs met, right?

    It is okay to be the teacher, so teach othes how YOU want to be treated!

    Please don't allow those closest to you to NOT learn how to be their best, to be the most loving person in your life, ESPECIALLY when you need them the most. It will only leave them with regrets..

    What do you guys/gals think?

    Jan

    My husband doesn't talk at

    My husband doesn't talk at all about his health, and doesn't want to be reminded of cancer.  Sometimes I want to tell him about something I've read, but I'm afraid it will bring IT up again.  I wish we were able to share this.  He doesn't talk about how he feels, or scans, or the results.  If our situation was reversed, I would talk to him and lean on him.  It's hard on me, not knowing what is going on in his thoughts.  He will tell me that he has always been quiet.  But he hasn't been like this.  I wonder if it's the extreme fatigue, or the drugs, or just pulling away from me.  it isn't at all what I want or need, or what I would expect.  

    I would like to know from someone here:  How do you know your loved one doesn't want to hear about your cancer?  Is it possible that you are misreading the situation?

  • Allochka
    Allochka Member Posts: 1,064 Member
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    a_oaklee said:

    one thread

    I appreciate hearing any ideas that Texas Wedge had for keeping topics together on threads.  I remember so often he would tell people not to start a new thread!  Always made me smile. 

     

    I was trying to think of a way to talk about all the things that have been brought up.  It sounds like you would like them to be random under the umbrella of "long timers".  I get that.  I'm just such an organization freak that I want to compartmentalize issues, but under a heading of Stage 4 (and 3), so that us oldtimers chime in.  I was also thinking of a way in which you could go directly to a conversation. 

    So far in this thread alone......

    Stage 3/4:  Longevity.  Letting go of possessions.  Providing for my family.  Life Insurance.  Disability.  Social Security.  How I want to go, when it's my time.  Choosing Hospice care. Quality of life decisions.  Living well and giving to others.  Financial decisions and planning.  Family cooperation.  Coping.  ETC.

    I think we probably each have quite a bit to say about all of the above.

    I actually like beginning with "Stage 3/4"....cause it makes me think of "Stage three-quarters.....the fraction"...as if it exists!  I can just hear a newbie asking what's stage 3/4?

    I'm just throwing out ideas....I can happily stay right here too.

    Annie

     

    To Stomper
    Oh, you teach

    To Stomper

    Oh, you teach philosophy!

    Somehow I've missed it before, I thought you a a history teachure. I just want to say that I was in college, philosophy lectures were the best  - most challenging and interesting. we even couldn't stop after lectures - we stayed for hour or more to continue discussions, luckiy those lectures were usually the last ones in the evening. And philosophy teacher is the one we always remember when we former students meet to hang out.

    I'm atheistic and find my answers about the surrounding world in natural sciences. And I guess  that philosophy is mother of all these sciences, no wonder all scientists of ancient world were phylosophers . 

    So with this as a relatively recent student myself I want to say that you should continue teaching not only for your own sake, but for your students too, to insipire and to give a broader outlook at the world for more and more young people.

    I'm very grateful to teachers like you!

     

  • Positive_Mental_Attitude
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    Who is this masked man?

    Jojo and Sarah, Most people call me Stomps, because I used to front a singularly unsuccessful band called Floyd and the Footstompers. I do live in the US, MD but I'm a Londoner from the East End.

    My mother called me Peter, so that makes me feel instantly guilty. I guess Pete is probably the safest bet

    So, Teacher: out of Sick Pay, out of Union sick bank, hours and pay cut by half. Now I'm being told that I'll have to be paid in arrears and so will not recieve my next pay packet at all. The Union are trying to find a solution.

    I've looked into disability but it would mean declaring myself unfit for a job I love. Frankly I cannot imagine not working and I reckon that would kill me quicker than anything else.

    Anyway just as another kick in the teeth was just the thing I needed, my insurance have just refused to pay for my next scan as they say its too early. Honestly who's in charge of my treatment and my life? The Doctors, my employers or the faceless hordes of endless bloody beancounters?

    Sorry. I'll turn my frown upside down tomorrow. Get back in front of my students and the its on with the motley. "Ride! Pagliacco!" and all that.

    Stomps--insurance companies

    Stomps--insurance companies can be real peaches, can't they?  I had a horrendous experience with mine after my initial diagnosis.  I live in NJ.  I was told I could get a second opinion after my first doc in NJ told me I would need a radical nephrectomy.  I was told I could go to NYC.  I did-to MSKCC.  Found a wonderful urologist-oncologist who confidently told me he would remove only 5% of my kidney with the tumor.  I move forward with him and the hospital.  6-7 weeks into the process and 2 weeks prior to my surgery, my insurance company calls me and tells me I can't go to my doc or MSKCC because they are "out of network."  I check online over and over again-and they are both listed as in network.  My wife and I persisently called, argued, lodged appeals.  I called a lawyer to consider suing them.  I kept pressing.  They were not budging.  Finally, someone suggested that I call a local assemblywoman to tell them what was going on.  Voila!!! The assemblewoman called a Sr. VP at my insurance company.  Three days later--everything was approved.  

    I was determined to not take no for an answer.  They f'd up, and I was not going to scratch my surgery and start over.  Dealing with the insurance company was more stressful than the diagnosis and worry associated with "having cancer."  And what made it worse in my mind is that in my 48 years of having health insurance, I never made a claim that required an overnight hospital stay.  I rarely go to the doctor.  The health insurance system in the US is f'd up beyond belief.  It was bad before Obamacare, and unfortunately, Obamacare did not fix the root causes of problems with US health insurance.

    Keep pushing on your health insurance company.  I learned that they are trained to keep saying no. Sometimes they back down if you make enough noise.

  • Srashedb
    Srashedb Member Posts: 482 Member
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    a_oaklee said:

    Bone density test

    Sarah, my husband is on medicare and had a bone density test paid for.  He was 66.

    annie

    Bone density

    Annie:

    How did the density test get around Medicare restrictions? This is a test my husband really needs.

    Thanks, Sarah

  • Srashedb
    Srashedb Member Posts: 482 Member
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    a_oaklee said:

    Bone density test

    Sarah, my husband is on medicare and had a bone density test paid for.  He was 66.

    annie

    Bone density

    Annie:

    How did the density test get around Medicare restrictions? This is a test my husband really needs.

    Thanks, Sarah

  • a_oaklee
    a_oaklee Member Posts: 566 Member
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    Srashedb said:

    Bone density

    Annie:

    How did the density test get around Medicare restrictions? This is a test my husband really needs.

    Thanks, Sarah

    It was ordered by the

    It was ordered by the oncologist, like any other test.  We got an appointment, showed up, did the test.  Medicare paid for it.  There was no copay.   Our oncologist did not have any difficulty requesting the test.  It was as simple as a lab test being ordered.

    Can you share in more detail whAt you have gone through re this test?

  • a_oaklee
    a_oaklee Member Posts: 566 Member
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    a_oaklee said:

    It was ordered by the

    It was ordered by the oncologist, like any other test.  We got an appointment, showed up, did the test.  Medicare paid for it.  There was no copay.   Our oncologist did not have any difficulty requesting the test.  It was as simple as a lab test being ordered.

    Can you share in more detail whAt you have gone through re this test?

    More info

    I just got online with a Medicare website and read the guidelines for bone density.  Perhaps my husband had no difficulty getting this test because he has bone mets.  One of the possible criteria is being at risk for possible pathologic fractures.  Additionally, my husband gets Demosamub injections monthly.  Another possible criteria is that the patient is taking a bone agent.  I guess these two reasons are why we had no problem.  I would think your oncologist could file some type of appeal for coverage.  We have had to do that a couple times for other issues.

    Your husband should qualify under the criteria due to the spinal mets.  That's the same as my husband.  the possibility of pathologic fractures of the vertebrae exists.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    a_oaklee said:

    My husband doesn't talk at

    My husband doesn't talk at all about his health, and doesn't want to be reminded of cancer.  Sometimes I want to tell him about something I've read, but I'm afraid it will bring IT up again.  I wish we were able to share this.  He doesn't talk about how he feels, or scans, or the results.  If our situation was reversed, I would talk to him and lean on him.  It's hard on me, not knowing what is going on in his thoughts.  He will tell me that he has always been quiet.  But he hasn't been like this.  I wonder if it's the extreme fatigue, or the drugs, or just pulling away from me.  it isn't at all what I want or need, or what I would expect.  

    I would like to know from someone here:  How do you know your loved one doesn't want to hear about your cancer?  Is it possible that you are misreading the situation?

    Grade 4 Stage 4

    Lets face it the prognosis aint great is it? One thing I would like to do is to get my family to think of death as an inevitable part of life. Also I dont know how to die in America, they do it different over here. Last week I went to my first alcohol free wake. Let me assure you, that is NOT the way its done in London! Above all else I would like my family to accept that death is coming, not today, hopefully not tomorrow, but he is lurking in the neighbourhood. I'd like them to be involved in planning a God free funeral - how do you do that by the way? But they dont want to talk about it. My son (Aspergers) insists I will live another 70 years (that will make me 123 so I admire his optimism). My daughter doesnt want to talk about it because it makes her sad (at 20 shes the youngest). My wife, a viral oncologist, is pretty much in denial.

    If anyone's interested, in an English funeral.

    Enter to Jelly Roll Morton 'Didnt he ramble' "Ashes to ashes, dust to dust, if the women dont get you the whisky musy"

    Shakespeare The Tempest "We are such stuff that dreams are made on"

    Exeunt: 'Always look on the bright side of life'

    I would value their input. I think it would help all of us.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    Jojo61 said:

    Stomps/Peter

    You gave me a chuckle. Your poor mom thinking she had to keep that secret all that time!

    You are inspiring, that is for sure! You need to come teach in Canada - we sure could use you. Teachers are very well paid here - $80 to $95K (of course our dollar is about 30% lower than yours) and the benefits and pension are fabulous. But it isn't an easy job. I am a school secretary in a very needy school and I see what teachers have to deal with. Although it can be very rewarding, it can be frustrating as well.

    I hope the right answer reveals itself for you. It isn't a very fair situation.

    Hugs

    Jojo

    I'm good with the tough kids apparently, what someone called 'reluctant learners'. My reward? They put all the tough kids in my class. Yipee! I've lost three kids to juvenile detention already this year.It can be a bit frustrating.

    But I;'m not a hard man or a tough guy. just infinately patient. When I was in the ICU getting IL2 about 60 of my students made and sent me 'get well cards'. Kids always surprise you

  • todd121
    todd121 Member Posts: 1,448 Member
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    Do you know how kids treat subs?

    Not catholic, my mother actually revealed that we were secretly jewish on her deathbed - it was a little strange. Its just that the only time she used my full name was when I was in trouble. Does being secretly Jewish add extra layers of guilt?

    Yes I get the impression that if I claim disability I will lose the right to work. If I work 0.5 I retain my benefits and pensions.

    SSDI

    My understanding was you can work, but they offset your benefit by the amount of your income. You don't lose your disability if you work. You just lose the amount you made that period.

    Not sure if I'm correcting what you said or we're agreeing!

    But it's not as bad as many people think. In fact, you can get approved and stay approved for up to 5 years yet continue working, then if you can't work, you just stop working and they start paying you.

    Todd

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    todd121 said:

    SSDI

    My understanding was you can work, but they offset your benefit by the amount of your income. You don't lose your disability if you work. You just lose the amount you made that period.

    Not sure if I'm correcting what you said or we're agreeing!

    But it's not as bad as many people think. In fact, you can get approved and stay approved for up to 5 years yet continue working, then if you can't work, you just stop working and they start paying you.

    Todd

    Thanks

    Youre actually supporting what I'm discovering for myself. Its a very foreign system to me, so thanks.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    Vent

    I'm amazed how few people vent on here. 

    I know we want to be positive, but we cant be all the time. Sometimes I just get bloody angry.

    So here goes

    All my lumps are bigger. I should've expected it. Well I guess I did. This is the way it goes. New lumps in my lungs. I hate the way that this disease takes the energy I get from my food and drink and turns it against me.

    Whatever. It is what it is. And I hate it!